Life with Endometriosis: What you need to know

Endometriosis, a condition not well known, but a condition that affects 1 in 10 women, most of which are unaware of the chaos that is happening in their own bodies. After almost 15 years of pain, I can finally say that I am an Endo sister. I have finally been diagnosed. I sit here now with 4 holes in my stomach after having keyhole surgery to remove a cyst the size of a grapefruit and to clean up the endometriosis that left my insides mangled together and my fertility in question. And I feel a sense of relief! Sore, but relieved that I have been taken seriously and that I am finally getting treatment for something that I have struggled with for most of my life. Relieved that my future as a mummy is still in tact.

But what is Endometriosis? It is when the lining of your womb which makes up your period, grows elsewhere in the body. When it is time for your period, this lining sheds blood like it would do in the womb except the blood gets trapped in your body which can then turn into a sticky glue that sticks your organs etc together causing pain and reducing fertility.

For me heavy periods was a normal part of life. I had started my first period at 8 years old and from then on they were a constant pain every month. As I got older, the heavier and more painful they became, until one day when I was 15 years old the pain had gotten the better of me.

I woke in the morning with a horrible cramp in my stomach. “Great”, I had thought, I have my period. But as the morning progressed the pain didn’t subside and I found myself doubled over unable to walk. My parents, not sure what to do, tried everything to ease my pain. They thought I had just contracted a stomach bug, but when I threw up everything they tried to give me and then passed out from the pain, they knew something was up. A trip to the ER and I was sent home and told that I had a low pain tolerance, told to suck it up, period pain is a normal part of being a woman.

From then on, I would fear the time of month. It was always a lucky dip. Was it going to be a normal period this month or was I going to suffer? I never knew when it would come and what was worse was that no one would take me seriously. Countless times to the nurse at school or to the ER and each time told it is a normal part of being a woman. I came to the point where I used to hide it, try and sit in the corner until it passed because I was scared that people would think I was a drama queen, that I was an attention seeker. Trying to hide it was difficult, when you are in so much pain that you are throwing up and passing out it is hard for people not to notice.

I was on my way to the cinema with my mum and I could feel it coming. I found myself drifting in and out of consciousness. As I walked in to the cinema room trying hard to keep up appearances, my body finally had had enough and I fell to the floor. I saw the panic on my mums face as she tried to lift me up and call the paramedics. Surely they would believe me this time? I am not faking it! I was at the movies, I was having a good time! But to my disappointment the paramedics scoffed and told me the same thing all the others had. It wasn’t until the manager of the cinema took my mum aside and said this isn’t normal. Get her checked for endometriosis.

Endometriosis? I had never heard of it before but to my dismay my doctors didn’t seem to know much about it either. Their approach was to put me on the pill and hope for the best, if that didn’t work well then I just had to learn to accept it. At times, it was just plain embarrassing. When you pass out and throw up while you were in the toilet in the middle of a work day and are escorted out with your knickers in full view it is hard not to be embarrassed!

But with each episode, I found a new person who was struggling with something very similar and came to understand that it was a condition that was slowly getting recognised and that was a lot more common than I was lead to believe. Heavy periods, ovarian cysts, excruciating pain each month, symptoms of IBS and problems falling pregnant are all symptoms of endometriosis and if you suspect that you may have it I am here to give you hope and encourage you to get the treatment you deserve. Do not let anyone tell you that it is part of being a woman or to just suck it up! It is NOTnormal to pass out from pain every month! It is NOT just part of being a woman and NO you do NOT just have a low pain threshold!

It’s estimated that Endometriosis affects more than 2 million women in the UK and there are still a lot of women out there who are unaware of this condition. I feel like I am lucky, even though I suffered for a long time I am by far the worst. A lot of my fellow Endosisters suffer daily, with their quality of life greatly diminished and their chances of becoming mothers taken away from them. My heart and my respects goes out to all of them and I think it is our responsibility to create awareness of this common yet virtually unknown disease. Awareness of endometriosis has come a long way in the last 10 years but it still has a long way to go, if you would like to help or wish to learn more then take a look at http://www.endomarch.org. Any little bit helps.

2 Comments

I cannot agree more with everything you shared. I have been suffering from period for last 2 decades and only recently got diagnosed with endometriosis! I feel your pain and also how we think others might think of us as ‘Drama queens’!
Do let us know if laparoscopy helped and has life changed ?

KYLIE ABREU

March 8, 2017

Hey FreeSpirit

Thanks for your comment. I hope you are coping ok, it is hard when you are diagnosed at first. It really is unfair what us women have to go through, especially when no one believes us. It is hard to tell so far with the Lap, It takes awhile for your body to adjust plus my Gyno inserted a mirena coil to stop the endo getting worse. So I have been getting a bit bloated with a bit of stomach pain but she has said it is normal as it has only been 4 weeks. But my scars have healed nicely and I am starting to feel like my old self again. I had constant stomach and back pain from the cyst and they discovered that it was stuck to the sides of my body. Since the op that pain has gone, plus my stomach is flatter. I would definitely recommend seeing someone to discuss a lap because i think if you have cysts or adhesions it would really help if you wanted a baby and can really help with pain. xx